Natalie DeMatteis wrote -
Cystic Fibrosis is a disease I had heard of often but never took the time to truly understand until my cousin Tarra, or I like to call Bird, was diagnosed with it. Here was this beautiful cousin that was like me in many ways; spunky, active, young, but diagnosed with a disease that would potentially end her life much sooner than mine. Cystic Fibrosis is a genetic condition that causes the lungs and digestive system to become clogged with a thick sticky mucus which in turn causes recurring lung infections, a persistent cough and poor weight gain. When I decided I wanted to train for a marathon, I knew that I wanted it to be an experience that I could share with Tarra. Not only because of her everyday fight, but a girl who inspires me because of her fearless charismatic approach to this battle. I am running to raise awareness and I’ve asked Tarra to share her story to help educate those that like myself, had heard of Cystic Fibrosis, but never quite understood it.
Tarra Burk’s Fight with CF
My name is Tarra Burk and on the outside I look like any normal 23 year old. What people cannot see is that I battle a genetic disorder called Cystic Fibrosis. I inherited the gene for Cystic Fibrosis from both my mother and father. With over 1800 genetic mutations of the disorder, I have a common gene called Delta 508 as well as a rare X gene. As Cystic Fibrosis was becoming more prevalent, they began testing for it at birth, but now I am one of 70,000 people battling this disease and they have begun testing children at birth to determine if they have Cystic Fibrosis. Symptoms of CF are as variable as the mutation. Some have excellent quality of life and are healthy and able to care for themselves easily. Others find themselves in and out of the hospital battling infection after infection and are on a constant stream of antibiotics. Because no two people have the exact form of CF as another, this can vary drastically from person to person.
I am lucky in that I have a relatively high quality of life. I have learned how to take care of myself with my daily therapy hat consists of a vest that clears my airway twice a day, worn for a half an hour each time. While I’m doing my vest treatment I also inhale 3 different medicines to help clear my airways, switching the order of antibiotics every other month. Along with that treatment I can take over 30 pills a day that range from enzymes with my meals to antibiotics every other day to keep from getting infections, because the common cold could be fatal to my weakened immune system.
In the summer of 2015, I was hospitalized due to CF. I was working a stressful job that kept me busy 12 hours a day sometimes 6 or 7 days a week. I was missing daily treatments because of it and it took a toll on my already weakened immune system. I became tired, weak and I lost a lot of weight and before I could rectify this situation my body began to shut down. After 13 days in the hospital I realized that I needed to make a change to save my life. I needed to take better care of myself and for 7 months and with the support of amazing family, friends and my fiancé, I found the strength to leave my stressful job and my lung function is beginning to rise. I can now enjoy spending time with loved ones and have realized the importance of being active and taking good care of your health and not allowing CF to limit my life. I realize that other people with CF have not been so lucky nor have the ability to enjoy a lot of the things that I still can. I look forward to living a healthy life and planning my wedding and educating people on Cystic Fibrosis.
This is why I have chosen to run my first full marathon 5/15/16. I wanted to raise awareness for Cystic Fibrosis. My cousin would love nothing more than to be able to run beside me but is limited in doing so as is so many people out there fighting this disease. I run for research, I run for change, I run for Tarra. 100% of my donations are going to the Cystic Fibrosis Foundation PGH Division, to help fund CF research and to hopefully one day find a cure.